‘Why are we stuck in hospital?’ Understanding delayed hospital discharges for people with learning disabilities and/or autistic people in long‐stay hospitals in the UK

Abstract Despite longstanding efforts at de‐institutionalisation, around 2000 people with learning disabilities and/or autistic people in England currently live in hospital settings, amidst reports of protracted stays, limited progress towards living more ordinary lives and scandals of abuse and poor care. Yet, there is relatively little research on why people with learning disabilities and/or autistic people are delayed in hospitals, and what exists has significant limitations. In particular, previous studies have rarely talked directly to people with learning disabilities and/or autistic people, their families and frontline staff about their experiences of living or working in such settings, the barriers to discharge and what would help more people to lead chosen lifestyles. This paper presents the findings of a structured literature review conducted between January and March 2021 on delayed discharges of people with learning disabilities in long‐stay hospital settings. It investigated: the proportion of people with learning disabilities delayed in long‐stay hospital settings, the suggested reasons for these delays and the proposed solutions. The literature reported delays for 11%–80% of inpatients in different settings. The reasons reported are related either to particular characteristics of the person (which we find problematic) or limitations of the system supporting them. However, delays were defined and reported inconsistently, reasons usually lacked depth and detail, and the majority of included studies did not engage directly with the people living in long‐stay settings, their families or frontline staff. Without listening to these voices, genuine solutions will be difficult to find.

care and support at home rather than in potentially long-stay hospital settings such as inpatient units, secure settings or assessment and treatment units (ATUs) has long been a key government priority. Internationally, there was a significant trend towards deinstitutionalisation over the 1970s-1990s, including trialling and scaling-up models of specialised community-based, non-hospital support for people with learning disabilities, such as the intermediate care programme in the USA, the Trieste model in Italy and the Andover model in the UK, as well as the development of small group homes in Nordic countries (Mansell, 2006). More recently, there has also been increasing recognition of the particular needs of people with autism at a global level (WHO, 2022). The care mix in the UK varies between the four nations, but shares a peculiarly complex and multi-sectoral makeup, with many categories of bed provision for different needs (Hatton, 2016), including services that are considered 'community' placements which strongly resemble institutions, as well as smaller hospitals that have a more 'community' feel, potentially blurring the distinction between types of provision.
A range of policies exist across the UK nations in response to reviews and incidents of poor care or scandal in services for people with learning disabilities. However, taking recent developments in England as an example (for illustrative purposes), the 'Building the Right Support' and 'Transforming Care' programmes were established after the Winterbourne abuse scandal was identified by a BBC TV documentary, 'Panorama' (Chapman, 2011). These aimed to enhance community capacity, thus reducing inappropriate hospital admissions and length of stay (NHS England andPartners, 2015a, 2015b). The overall goals were to reduce inpatient beds by 50%, enhance community services through 48 'Transforming Care Partnerships' and ensure the use of independent 'Care and Treatment Reviews' (CTRs) for those in inpatient care. However, several targets were missed and significant challenges persist: ▶ In February 2015, NHS England and Partners (2015b, p. 6) committed to closing long-stay institutions and discharging most patients, aiming for hospital care for 1300-1700 people by 2018.
In 2019, Department of Health and Social Care (2019) set a further target of 400 additional discharges. But as of January 2021, 2040 people with learning disabilities were still hospital inpatients, 58% with a stay of over 2 years (NHS Digital, 2021).
▶ Various campaigning organisations (Duffy, 2019;Mencap, 2019;National Autistic Society, 2017;Voluntary Organisations Disability Group, 2018) have identified continuing issues with care in inpatient settings, including a lack of meaningful activity, abuse and inappropriate use of segregation and seclusion. In 2018 another undercover investigation found prolonged psychological and physical abuse at Whorlton Hall, a community provider (Plomin, 2019).
▶ Multiple official reviews have also been conducted, for example by the Parliamentary Joint Committee for Human Rights (2019) and the CQC (2020). There has also been criticism by Mencap (2019) of a lack of commitment to delayed discharges in the people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years. (Equality and Human Rights Commission, 2020) In addition to issues around poor quality of life and mistreatment, hospital services are also very expensive, with average weekly costs of £3500 and annual costs of £180,000 per person (Mencap, 2019; National Audit Office, 2017), creating a negative cycle of channelling funds into hospital units instead of into the kind of community care that policies intended to create. Although this brief summary has focused on the specifics of English policies, similar issues exist across the UK nations, highlighted by the Bamford Review and Hospital Resettlement Programme in Northern Ireland (Palmer et al., 2014), the National Care Review conducted in Wales (Mills et al., 2020) and in 'Coming Home: a review of out of area placements and delayed discharges for people with learning disabilities' conducted by the Mental Welfare Commission for Scotland (MWCS, 2016). Across the UK, the goals of all these reviews and policies are laudable, but significant barriers to transferring people from restrictive settings remain, and we need a better collective understanding of what is standing in the way.

What is known about this topic
• There are longstanding concerns about how long people with learning disabilities spend in hospital and the quality of their care.
• Many people in long-stay hospitals may be 'stuck', that is clinically fit to be discharged, but unable to make this happen.
• Previous literature has identified issues such as the patient's level of need, funding and availability of suitable post-hospital placements as potential reasons for delays.

What this paper adds
• Shows reported delayed discharges in different settings in the UK since 1990, ranging from 11% to 88% of inpatients.
• Uncovers the lack of voice of people using services, families and front-line care staff in the existing literature.
• Identifies two types of reasons given for delays: relating to either the person themselves, or the wider system, but these lack detail and need to be explored further.

| ME THODS
To explore these issues, we conducted a narrative analytical review, summarising and interpreting the data presented in studies of different types to compare and contrast them in their original form (Mays et al., 2001). Its overall purpose was to identify the prevalence of delayed discharge for people with learning disabilities in long-stay hospital settings, how this was measured, whether service users, families and staff had been included in the research, and the solutions proposed. To achieve this, we adopted an approach used in previous DH/NIHR research into delayed transfers of care (Glasby et al., 2006) and the appropriateness of emergency admissions (Thwaites et al., 2017), replicating a search previously published here in Health and Social Care in the Community. The search terms and operators used were selected to gather sources which covered the population (i.e. adults with learning disabilities and/or autism), as well as the correct care settings (i.e. long-stay hospital provision for people with learning disabilities) and focusing on the specific issue under investigation (i.e. length of stay, delayed discharges or being 'stuck', rather than issues, treatments or processes unrelated to discharge). The search terms included as many variants and synonyms of "learning disabilities", "delayed discharge" and "long-term hospital" as possible, and Boolean operators were used to combine these (see Box 1 below for examples of search terms and Appendix S1 for the full list of search terms and operators used in each database search). The reference lists of articles included in this study were also searched for relevant titles.

| Inclusion and exclusion criteria
Each title and abstract generated by the initial search were reviewed independently by two members of the research team and selected for relevance to the overall aims and objectives of the study. Any articles found from the reference lists were included in this process. In the case of official data and reports (some of which tend to provide quarterly figures and updates), we included only the most recent official review of any national censuses from each of the four nations (rather than including every statistical bulletin in a broader series).
Studies were included in the review if they met the following criteria: • Reported original empirical data relating to the prevalence of or reasons for delayed discharges in UK-based settings.
• Referred specifically to hospital or long-term healthcare settings for people with learning disabilities and/or autistic people.
• Published from 1990 onwards (this year was chosen as it saw the passage of the UK's NHS and Community Care Act, which had a significant influence on community services available to those being discharged from hospital).
We consider long-stay hospital settings to be specialist facilities registered as hospitals that are operated by either an NHS or independent sector provider, providing mental or behavioural healthcare in the UK for people with a learning disability or autism. This could be at any level of security (general/low/medium/high), and for people with any status under the Mental Health Act (i.e. admitted informally or detained). In defining 'long-stay hospital' settings, we adapted the definition provided by NHS Digital (2021) (an official body which collates NHS data) in their regular statistical bulletins.
While this refers to services in England, our definition includes services across the UK.
Studies that were excluded included: material published and/ or based on data collected prior to 1990; local inspections where findings have been summarised in a national report; articles reporting findings from studies already included in the review; admission to non-long stay settings; and the admission of people with mental health problems (unless the person has learning disabilities and mental health problems). Also excluded were studies which only described the hospital settings, characteristics of the hospital population, their treatment needs or evaluated the services and treatments on offer, without addressing length of stay, the discharge process or why delays might occur. Similarly, studies which solely reported patient experiences or long-term outcomes after discharge were not included.
Included studies were summarised using criteria proposed by Mays et al. (2001) for assessing the quality of a range of studies.
Specific data were identified and extracted from each paper on the following: the prevalence of delayed discharge; the methods used to ascertain this; whether the research explored the experiences of people with learning disabilities, their families or frontline staff; the barriers to discharge; and any possible solutions identified.

| Overview of papers
In total, the searches produced 785 potential studies, after de-  Of the 13 academic articles, 11 used bed census or retrospective case notes analysis and did not include qualitative data. Three of the 13 academic articles also tested a tool or protocol designed to reduce delayed discharges and only 5 interviewed stakeholders such as nurses,

| Prevalence of delayed discharge
The settings investigated by previous research varied enormously in size, type and scale (see Table 1 below), so where a rate or prevalence of delay was reported these are not necessarily comparable.

Figures were often based on different definitions, or on proxy meas-
ures such as length of stay, readiness for discharge or the extent/ presence of discharge plans (see below for further discussion). The range of delays reported are shown in Table 1 and range from less than 11% to over 80%.
The highest prevalence of delay was 86% or 18/21 patients reported by Cumella et al. (1998) (2008) reported only 11% of patients as being delayed. This was also an ATU, but here 74% of people stayed less than 3 months.
In studies of secure settings, delays were reported differentlyoften based on the appropriateness of the setting/level of security for the patients' needs. Delays were still very prevalent: 32% of patients in a low security unit needed less security (Beer et al., 2005) and similarly in a high secure setting around one third could be considered for transfer (Thomas et al., 2004). In the medium secure setting explored by Alexander et al. (2011), 50% of people were considered 'difficult to discharge'-that is with a longer median length of stay than those discharged.
In those concerning general wards or a range of different service settings, delays were still significant, ranging from around 18% (Perera et al., 2009;Watts et al., 2000) to 29% (Devapriam et al., 2014) and 32% in one of the reviews conducted in Scotland (MWCS, 2016). In CQC's review across England, 60% of discharges were delayed: A lack of suitable care in the community prevented discharge for 60% of people we met. Most people in long-term segregation needed bespoke packages of care in the community, but this was difficult to achieve.
(CQC, 2020, p. 29) Those reporting proxies were higher: Kumar and Agarwal (1996) found 68.4% of people were considered 'suitable for discharge' (but still in hospital) and Mills et al. in their review across Wales found 54% of people 'could be considered for transition'.
A small number of studies also report the extent of delays: MacDonald found 67 people in 'out of area' placements (i.e. not within the local authority where they lived) across Scotland were consid-

| Length of stay
Length of stay is sometimes reported either as contextual information or as a proxy for delays. Some reported the proportion of stays for different lengths of time, others reported mean or median length of stay, and some a combination (Table 1). Oxley et al. (2013) also reported a longitudinal change in length of stay, with median stays increasing from 6 to 9 months across 4 years. Length of stay ranged significantly between settings-ATUs or similar had shorter lengths of stay than secure settings, ranging from weeks (Nawab & Findlay, 2008) to median stays of 3-6 months (Oxley et al., 2013;Washington et al., 2019). Notably, a large proportion of people stay in secure settings for many years: for example, 42% of people stayed over 5 years and 11% over 10 years in a medium secure setting (Alexander et al., 2011), mean lengths of stay in a locked rehabilitation unit were over 6 years (for those now discharged, Taylor et al., 2017) and mean lengths of stay reached over 10 years in a high secure setting (Thomas et al., 2004).
In studies reporting across a range of settings, often more than half of people were staying more than 5 years (Mills et al., 2020;Palmer et al., 2014;Perera et al., 2009). In Scotland, the MWCS's (2016) review across Scottish learning disability services similarly found around 70% of people staying longer than 3 years.
Given these averages include a number of short-stay settings,

| 'Explaining' delayed discharge
The range of reasons given for delayed discharges are shown in Table 2 below, covering reasons associated with individual characteristics and reasons connected to the discharge process and wider system. This is largely similar to Glasby's (2003) review of delayed discharges from general hospitals, which explored individual, organisational and structural issues at stake, and argued for the need to work across multiple levels concurrently.

| Personal characteristics
Many of the studies reported reasons for delayed discharges or excessive lengths of stay through associations with particular characteristics of the person delayed (see Table 2), by trying to find statistical associations between length of stay or prevalence of delay and patient characteristics such as age, gender, behaviour, level of disability, co-existing diagnoses and criminal record. For example, Washington et al. (2019) found that 61% of inpatients with 'barriers to discharge' had a secondary diagnosis of autism, while 41% had mental health diagnoses (e.g. bipolar, depression and anxiety).
In general, a number of studies find challenging behaviour, psychiatric conditions and a higher degree of intellectual disability to be the main predictors of longer length of stay or difficulty discharging (Alexander et al., 2011;Beer et al., 2005;Dickinson & Singh, 1991;Kumar & Agarwal, 1996;MacDonald, 2018;Thomas et al., 2004;Washington et al., 2019, Watts et al., 2000. These were largely linked to risk and those perceived as higher risk to themselves or others were often described as more likely to be delayed, unsuitable for discharge, or not ready for a lower level of security. 'Social' factors such as a poor home environment or lack of home support were also mentioned (Dickinson & Singh, 1991), along with the patient having high physical care needs or 'complex needs' such as mobility  2009-2011 and 44% in 1999-2001 issues, needing 24 h supervision, waking night staff or other intensive staffing needs (Kumar & Agarwal, 1996;MWCS, 2016;Thomas et al., 2004;Watts et al., 2000). Therefore, basic demographics such as gender or age were rarely found to be useful predictors of longer lengths of stay or delays.

As Oxley et al. (p. 38) observe:
It is important to keep in mind that individuals with intellectual disabilities accessing specialist inpatient services are more likely to present with complex clusters of symptoms and behavioural problems that may span several diagnostic categories.
Secondly, many studies report associations between charac-

TA B L E 2 (Continued)
fault. In practice, the vast majority of people would rather be at home, and the delay is due to system issues rather than any fault of the individual. In other areas of social policy, focusing on personal characteristics would be seen as 'victim-blaming', and might be considered offensive.

| System issues
Many of the papers also give reasons for delays that are related to the process of discharge, such as administrative issues, funding and the availability of suitable placements. In most, these factors are identified from case notes and so vary significantly, often dependent on the local context and reporting categories used by specific services or staff at the time the notes were made. Some of the reasons given are also speculative rather than derived from data, and many lacked further explanation ( Thomas et al. (2004), both responsible medical officers and nurses in a secure unit believed the majority of delayed transfers were because alternative placements simply did not exist or beds were not available. Similarly, Watts et al. (2000), Nawab and Findlay (2008) and Cumella et al. (1998) all report more than 70% of people delayed due to a lack of suitable accommodation or day care, and Perera et al. (2009, p. 169) ascribe 47% of delays to there being no suitable facility available in the community. Similar themes also emerged from national reviews, with MWCS (2016) finding that 74% delays in Scotland were due to a lack of suitable housing and 64% due to a lack of suitable service provider. MacDonald (2018) similarly reported that 51% of those delayed and in hospitals out of area were due to a lack of accommodation, with 15% because of a lack of service providers (not just accommodation). In Northern Ireland,  Oxley et al. (2013) reported that the majority of delays-50% and 69% respectively-were actually due to difficulties in identifying and/or securing a suitable placement rather than simply a lack of placements: Surprisingly, only one patient was delayed due to lack of availability of an appropriate placement in the community; the rest had existing community placements identified and only one other patient had to wait for a bespoke placement to be commissioned. This reiterates that the reason for delay in most cases is a system issue rather than a lack of available placements for complex care in the community. (Devapriam et al., 2014, p. 213) Where studies explored these issues in more detail, they pinpoint particular missing elements of community placements-for example, a lack of specialist staff, training or an inability to meet particularly complex patient needs (MacDonald, 2018;MWCS, 2016;Washington et al., 2019;Watts et al., 2000). For a small minority the reasons for delays included not being able to go back home or back to their original placement, either because the patients' needs changed and staff or family could no longer cope (Nawab & Findlay, 2008;Oxley et al., 2013), the placement had become unavailable (bed filled) or their family circumstances had changed, for example one patient's parents had died and another's were in another country (Dickinson & Singh, 1991). Together, a "lack of placement" seems to indicate all or some elements of a future placement being missing, whether that be related to family circumstances, housing, the level of care needed and the specialism/training of staff. In one sense, all delayed discharges are caused in part by the 'lack of a suitable placement', almost rendering this category so broadly defined that it loses all meaning.

Funding of patient care
The availability of public funding (whether this is the high cost of services, delays in seeking approval for funds to be spent or disagreements between different health and social care partners as to who funds the person's care) was the second most common reason for delays in transferring to lower security, according to Thomas et al. (2004). MWCS (2016) also found 41% of people were delayed due to 'funding issues', while for Watts et al. (2000) 'insufficient funding' contributed to 23% of delays. Funding issues obviously affect the availability and suitability of a placement and even where funding and placement issues have been reported separately, it is clear that these categories are not mutually exclusive, e with many patients delayed for both reasons (Cumella et al., 1998;Devapriam et al., 2014;Perera et al., 2009;Watts et al., 2000). Sometimes, agreeing funding seemed to be the issue (rather than necessarily the amount of money available), with Cumella et al. (1998)  packages across health, social care and housing. As with labels such as 'lack of suitable placements', it is difficult to tell what delays due to 'funding' actually mean in practice. After all, people are often delayed in very expensive hospital settings, suggesting not an absence of funding but perhaps that existing funding is stuck in the wrong place in an inflexible system: difficulties moving funding creates difficulties moving people.

Discharge process issues
Broadly, the literature highlights two areas of the discharge process that seem particularly problematic-waiting for assessments and a lack of proactive discharge planning, often not using tools or protocols that are already available. Both Devapriam et al. (2014) and • Stage 1: Assessment of needs and identifying an appropriate placement.
• Stage 2: Awaiting funding decisions from Local Authority and Health Authority-including resolving disputes over responsibility.
• Stage 3: Awaiting authorisation of funding from the responsible authority.
• Stage 4: Waiting for package to be ready, for example staff trained, accommodation adapted.
Nearly half-and the largest proportion of patients-were delayed at the first stage for the longest period of time: an average of 4 months, but the longest reaching 2.5 years. MWCS (2016) also identified timing issues with the discharge process: for some patients, waiting for funding decisions at different stages resulted in potential placements being filled by someone else, indicating there were appropriate services but potentially not enough spaces in them, or a lack of mechanisms to prioritise people for transfer. Naturally, there are challenges in governing a complex, multisectoral system that directly impact discharge processes. In Northern

Changing service providers, policy and governance
Ireland, for example, Palmer et al. (2014) identified misalignments of funding streams and lack of coordination between health, housing, social services and social development departments to be a significant barrier to progress in discharging delayed patients. An overall resettlement plan including monitoring and procurement was also lacking, with weak engagement with patients and families by Health Trusts. The CQC (2020) also highlighted how disputes between local and national commissioners or between health and social care stakeholders can lead to a lack of agreement over responsibility for funding the person's care-especially during transition periods.
Governance issues also influence commissioning and CQ C (2020) noted commissioners' fears as a barrier to developing community services, reporting that commissioners perceived higher risks in the community than hospitals with 24-h care, and sometimes incorrectly assumed community packages are more expensive than hospital beds. Cumella et al. (1998) also found different commissioning approaches influenced the extent of delays, identifying three distinct approaches: • A 'devolved' approach-local teams organise transition process and placements, commissioners approve funding.
• The 'clinical approach'-a resettlement officer liaises between providers and community teams throughout discharge process.
Of these, the third approach was identified as most successful in reducing delays, alongside specific discharge protocols and CTRs.
This literature is from the late 1990s and refers to a period shortly after a significant effort at deinstitutionalisation, so relates less to recent policies and structures. However, the issues it uncovers suggest that-both now and historically-the roles, responsibilities and processes relating to discharging patients with learning disabilities from hospital have been poorly defined and coordinated across health and social care systems in the UK.

| Perspectives and voices
Above all, a key argument of this paper is that the perspectives and voices of people using services, their families and front-line care staff are often overlooked in the debate over delayed discharge (see Thwaites et al., 2017 for a similar argument with regards to older people in general hospitals). In our review, most of the data used derives from bed censuses, case notes and the views of the individual researchers (often a medical practitioner). Remarkably, no academic journal articles we included were able to assess the prevalence of delay, suggest reasons for those delays AND include the voices of service users, families and front-line care staff. Whilst patient and family voices were entirely absent from the academic literature (see Table 3), they were sometimes present in the national reviews included (which were usually authored by or in collaboration with a third sector organisation or national health and social care body).
Even professionals' voices (nurses, doctors, ward managers etc) were only found in five of the 13 academic papers included. These were included either to assess the appropriateness of the level of security for patients (Beer et al., 2005;Thomas et al., 2004), give further detail as to the reasons for delay (Cumella et al., 1998;Kumar & Agarwal, 1996) or, in one case, give feedback on a new discharge protocol (Taylor et al., 2017). However, these sometimes seemed like 'add ons' to the 'main' finding-the overall prevalence of delays (usually defined via bed census/case notes and based ultimately on the opinion of a lead researcher, usually a medic).
In contrast, the national reviews included from across the UK tried to include perspectives from a range of stakeholders-service users, carers, frontline staff, managers and commissioners. They did this using a range of methods such as questionnaires, focus groups, observations and interviews designed to delve deeper into the experiences and quality of care and practices involved, and the reasons behind delays. For example, Mills et al. (2020) included multiple perspectives at each visit:

| Recommendations and implications for practice
Generally, the recommendations made fall into three broad types.
Firstly, several studies stress the underlying principles of better provision, such as more and better services in the community for people with learning disabilities and/or autistic people (Beer et al., 2005;Cumella et al., 1998;Dickinson & Singh, 1991;Kumar & Agarwal, 1996;Thomas et al., 2004). Many also see closer joint working and coordination of services between social services and the NHS as a priority (CQC, 2020;Devapriam et al., 2014;Mills et al., 2020;Nawab & Findlay, 2008;Oxley et al., 2013), including suggestions such as joint development of a greater range of community services or packages of care for complex needs (CQC, 2020;MacDonald, 2018). Secondly, studies make recommendations in terms of knowledge and information, both relation to services and to research-building understanding, gathering and reporting data and monitoring progress. Finally, there are specific recommendations for changes to the management and delivery of services for people with learning disabilities, and specific calls for improved discharge processes. Almost all of the papers included call for more high-quality research-some specifically for studies comparing different sites, settings and approaches rather than studies of singular sites or interventions (Alexander et al., 2011;Taylor et al., 2017).
Only one paper (Taylor et al., 2017) specifically recommends more focus on service user and family experiences and perspectives. In relation to services or the system, MWCS (2016), Perera et al. (2009) and CQC (2020) suggest a standard reporting and monitoring system for delayed discharges, including reasons for delays (and admissions), whether or not reviews have taken place and protocols been followed. Alexander et al. (2011) also recommend outcomes-based commissioning in order to capture the complexity of people's needs and perhaps avoid the largely useless exercise of trying to explain delays using individual characteristics as described above.
Many that include recommendations about the discharge process itself call for more streamlined processes, earlier and better discharge planning with greater involvement of service users and families (CQC, 2020;Cumella et al., 1998;Devapriam et al., 2014;Nawab & Findlay, 2008) and consistent use of available tools, protocols and legal frameworks such as CTRs, the Care Programme Approach, the Mental Health Act and existing discharge protocols (Cumella et al., 1998;Mills et al., 2020;Nawab & Findlay, 2008;Watts et al., 2000). This includes one study calling for greater use of a specific decision making tool for addressing delayed discharges (Devapriam et al., 2014).
Other recommendations relate to responsibilities, governance and relationships between stakeholders at different levels, ranging from suggesting a national commissioner responsible for reducing delayed discharges (CQC, 2020) to a designated professional within local services whose remit is to manage and streamline discharges, like the resettlement officer or responsible person role proposed by Cumella et al. (1998) (Cumella et al., 1998;Taylor et al., 2017), or models which seek to reduce risk and readmissions by continuing clinical support from the current hospital team during and after the move to the new setting (Oxley et al., 2013;Washington et al., 2019).

| DISCUSS ION
This review has explored the extent of delayed discharges for people with learning disabilities from long-stay hospitals across the UK, the reported reasons behind these delays, the range of recommendations made to address the problem and the extent to which service users, families and front-line care staff have been engaged in previous research. We found that a very significant proportion of people across various long-stay settings are considered to be delayed or experiencing excessively long stays-some for decades. The reasons for this are broadly reported to be because of the extent or complexity of the individual's needs, or because of system issues such as a lack of suitable services in the community, disputes and issues with funding, poorly designed or implemented discharge or transfer processes, and wider problems with governance, commissioning and inter-agency relationships.
However, the use of statistical analysis to link particular individual characteristics with delays or longer stays was generally unhelpful and lacked explanatory detail, running the risk of 'blaming the victim'. Explanations such as 'funding' or 'lack of suitable placements' provide some sense of what might help, but often lack detail and may over-simplify more complex realities. Moreover, the range of solutions proposed to improve the situation around delayed discharges often appear overly generalised, such as calls for more development of specialist community services and clarity over who has political and financial responsibility for the problem, issues which have already been highlighted in decades of UK policy programmes.

| Limitations
A very limited number of articles met the inclusion criteria, and the lack of inclusion of patients and family members' voices in the academic studies included is notable. Considering this is a high-profile, long-term and hotly debated issue, it appears to be significantly under-researched, with existing claims to knowledge limited to a handful of very context-specific/professionally-dominated studies and national reviews in response to particular controversies. An additional limitation is that delayed discharge (or 'being stuck' in hospital) is defined and reported so inconsistently across the UK, resulting in such varied terminology that meaningful comparisons of rates of delayed discharges across different studies and locations are very difficult. The lack of patient and family involvement in the academic research studies could relate to the complex methodological and ethical considerations needed to work more closely with this population in research, (which academics may find prohibitive when seeking undertaking research in this area), or it could be that there is a philosophical divide between quantitative and qualitative methods: very few studies assessed both the prevalence of delayed discharges AND directly gathered qualitative data on the experiences of the people involved. In particular, it could be that-as a society-we do not value the lived experience of people who draw on care and support and their families-as a source of insight and expertise in its own right.
Either way, these perspectives are the most notable absence in the literature and this inevitably results (at best) in a partial picture of why people are stuck in hospital and what might make a difference.

| CON CLUS ION
Above all else, any further research in this area must include the lived experience of people living in long-stay hospitals and their families, as well as the practice knowledge of front-line staff. Such perspectives represent a key form of expertise that we neglect at our peril, and it is difficult to see how we might produce genuine solutions to these longstanding issues without drawing more fully on these insights.
Linked to this, there is a need to move beyond broadbrush explanations ('lack of suitable placements' etc) to unpick what this actually means, understand what might be needed to resolve the perceived issue and actually put such proposed measures in place. Future research and policy should also adopt standardised definitions, as is the case in other service settings (general hospital care for older people, for example). Proxy indicators of delayed discharge such as length of stay or number of people with discharge plans, coupled with a general lack of precision in terms of definitions, mean that data cannot be aggregated and that the extent of the issue cannot be fully understood.
Beyond the prevalence of delay, there is also insufficient understanding of the amount of time different people are delayed, what this feels like and the impact it has on subsequent outcomes. Despite widespread and longstanding official commitment to enabling people with learning disabilities and/or autistic people to come out of long-stay hospitals and lead more ordinary lives in the community, too many people are still 'stuck' in hospital-and it is nothing short of a national scandal that we still do not know enough about why this is or what would genuinely make a difference.

ACK N OWLED G EM ENTS
This project is funded by the National Institute for Health Research

CO N FLI C T O F I NTE R E S T
There are no conflicts of interest arising from this article.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data sharing is not applicable to this article as no new data were created or analyzed in this study.

S U PP O RTI N G I N FO R M ATI O N
Additional supporting information can be found online in the Supporting Information section at the end of this article.